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RHABDOMYOSARCOMA

dana1969
Posts: 1
Joined: May 2001

HI,
I AM LOOKING FOR ADULTS WITH RHABDOMYOSARCOMA. IF YOU WOULD LIKE TO TALK, EMAIL ME AT DPJERSEY@AOL.COM

cricker
Posts: 1
Joined: May 2015

Hi Tom,

It's been a little while since you originally posted on here, so I'm hoping you'll see this. My cousin was diagnosed with stage 4 alveolar rhabdo when she turned 5 years old. She has responded well to chemotherapy and radiation, but is nearing the end of her treatment plan. Her parents are having a difficult time deciding a post treatment plan. Did you receive any treatments after the cancer went away? Do you have any suggestions on what they should do? Anything will help!!

Thanks,

Cora

LCSL2
Posts: 3
Joined: Jan 2013

I really hope you see this message and have some good feedback for me. We are about to start this same protocol for our 2 yr old son. How old was your son kyle when  he went through this chemo and how did he do? 

positivemum01
Posts: 2
Joined: May 2010

Hi Linda, It seems we have sons with the same cancer. Logan is now 6, but diagnosed in Jan when he was 5. The oncologist has never been clear exactly which strain it is. Only that it is definately NOT alvioli, and nor Embryonal! It is somewhere in between . I wish they would name it so that I could research it. I am going to ask for the pathology reports in our next meeting. I am starting to get more strength and confidence with this journey now, rather than being a mild, meek scared mum as I was at the beginning. That is probably text book I guess.

Logan is on 54 weeks of treatment. Vinchristine, IE, VDC, I VAC. tHE WORKS. It is from an American study ARST0431. I am so glad that we are in 2010 and not 1975. The treatment seems agressive, but we are stage 4 so it has to be. I look forward to chatting to you if you have time. We are in for 5 nights of IE in Brisbane, Australia.
Regards, Lisa

emarquez
Posts: 1
Joined: Aug 2010

My son was initially diagnosed with alveolar rhabdomyosarcoma in 2005 when he was 18 months old. He went on 10 sessions of brachytherapy, 42 weeks of chemo (VAC) and a few surgeries. He was fine until the cancer came back in July of 2010. he is now 7 y/o and will undergo 54 weeks of Chemo (ARST 0431). By God's grace I believe that he will beat this cancer again and for good. Let us just keep on praying and keep the faith. Philippians 4:13

Elyza
Posts: 1
Joined: Nov 2011

hi Linda. i just found out today that i have rhabdomyosarcoma through the biopsy results. Last July, there was a small acne on my chin and TODAY it is a tumor. My entire chin is swelling due to the growth of this cyst. The plastic surgeons said that they will conduct a surgery and then i can go for chemo. I am not sure what to do now. I seek for some advice from you since your 21 year old son had gotten it before.

grannyj7
Posts: 1
Joined: Sep 2009

I don't know how old your sister is, but my 6 year old granddaughter was diagnosed in 2005 with embryonal rhabdo. The tumor was 5 cnm and because of location could not be removed. She underwent 42 weeks of chemo and 30 radiation treatments and is now a little more than 3 years cancer free and doing extremely well.

angel2930
Posts: 4
Joined: Mar 2011

Hello I was glad to hear about your grand-daughter doing so well. I hope that is the case still because your post is from 2009. I was wondering if you don't mind me asking where the tumor originated from? What area of the body? My son Bailey (6yrs old)has been diagnosed with embroynal rhabdomyosarcoma of the pelvic region stage III(although the doctors have no idea where it originated from they feel it may have started from behind the abdominal cavity and grew forward)because of the location they could not operate so we are currently going through a year of chemo and two weeks ago finished 6 wks of radiation. I have had little luck with finding cases such as ours, but hope to post our story so that others can share their stories. I hope and pray all is well.

kenya
Posts: 3
Joined: Nov 2015

Hello

My 22 year old son was diagnosed with Embryonal rhabdomyosarcoma of the bladder and prostate. We are having a bumps in our journey. If all possible can you email me. It would be a blessing to share possible effective treatment plans. I am desperately trying to save my son's life.

Kenya110679@gmail.com

Thank you much 

wendybell
Posts: 1
Joined: Jun 2010

on may 14th 2010 our 8 year old daughter was diagnosed with emb rms in her left cheek.....the pterygoid muscle and unfortunately extends up into her cranium. i am guessing if yours was in your cheek it was also the pterygoid muscle where it started. is that correct? what form of treatment were you given. how are doing? hope all is going well for you.

Charl1986
Posts: 2
Joined: Jan 2008

I am a 22 year survivor and have experienced sinus v-tach so suddenly/severely recently, that it was necessary to chemically convert me in the ER. I will be seen Monday by a cardiologist here in Atlanta but my doctors are suspecting an additional electrical pathway that may have been developed in my heart. I underwent 2 full years of chemo from 1986-1988 the first year 3 tretments a week for Stage IV Rhabdomysarcoma. Cytoxin, Vincristine and Dactinomycin were the drugs of choice. I have been told that the chemo may have damaged my cardiac system...any knowledge or experience with this? Please respond with any/all knowledge of or experience regarding long term cardiac effects of Vincristine, Dactinomycin and Cytoxin on the cardiac system.
Thank you,
Charlene

Tom C.
Posts: 11
Joined: Dec 2009

Hi Charlene. It is interesting that you bring up this subject. I am a 36 year survivor of rhabdomyosarcoma. About four years ago I started to get yearly cardiac check-ups after learning that Dactinomycin can cause heart muscle damage if administered in too high of a dosage. Back in the 1970's I had roughly twice as much of this drug as is recommended in today's treatment protocol. Fortunately, I have not suffered any substantial heart muscle damage, although my ejection fraction is slightly lower than other males my age. (This is the force in which the heart operates when pumping blood)

I have yearly echo-cardiograms and a heart MUGA test every other year. I have been advised that cardiologists are looking to see how the heart responds to exercise, meaning does the heart's ejection fraction fall within the "normal" range and more importantly, is the heart enlarged due to prior treatment. I am taking 10mg of Altace daily which is an ace inhibitor and my ejection fraction has actually improved over the last four years.

Are you taking any heart medication? Are you experiencing any fatigue or shortness of breath? It is very wise that you are on top of this as researchers are just finding out what some of the long term effects of chemo are on adult survivors of pediatric cancers.

Good Luck, Tom C.

No Rotel
Posts: 1
Joined: Mar 2011

Tom, Iam so where you are right now. 35 yr survivor, diagnosed at age 15 and here I am today trying to keep up with all the recommendations following the massive amounts of chemo and radiation we received.

Had a 3 day physical at St Judes Long term follow up study, but did not includ a psych eval. I feel so isolated and mis-understood.

Glad Ifound this site. Bless you. You have given wonderful advise!

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